RIP BrainHell

BrainHell died yesterday. He was a husband and father of two on an inevitable journey with ALS.

Image description: A color photo taken by the subject, his arms outstretched to hold the camera for a head-and-shoulders shot. He's a man in his 40s, dark hair, intelligent brown eyes with very arched brows. BrainHell wears a dozen electrode sensors on his forehead, ears and in his hair, with a halo of multi-colored wires encircling his head.

He was honest. Insufferably honest, sometimes. He used his blog to record random personal thoughts and childhood memories, share frustrations about his failing body, provide instructions for his nursing care as his ability to communicate became more difficult, leave love notes to his family, and express anger too.

I was an inconsistent but devoted reader of his blog, and to my knowledge, he never specifically wrote about "disability rights" or "crip culture," but he lived the experience and shared it organically, apolitically. Just two weeks ago, a typical BrainHell entry on the tricky dynamics of intimate personal assistance:

he started out being my best night caregiver. he calls me 'the best in the west' sans irony, and agrees when i say i respect him and would never play games. but once i am helpless in bed, his anger mounts as he accuses me of ringing the bell to toy with him. it frightens me. l wonder if he knows that when he does this, he is acting like the mean rich people told me about. i want to work with him, not ask the agency for someone else.

BrainHell wrote often about inadequate care but, as with everything, he never really bothered to return and provide closure of any kind to the problems or speculations he shared with readers. He was writing about uncertainty anyway, and it would have been an indulgence to readers if he had. I don't believe that was his style.

His Amputation Derby entry of about three years ago seems especially poignant now:

Here's a fun game: what body part would you be willing to part with in exchange for being thereby cured of ALS?

You might think I'd give up an arm and a leg quite happily so that I would not DIE! But people are always trying to get the best deal for themselves, always scheming and calculating...

See, I have this gut feeling, perhaps totally foolish, that I will live long enough to witness a treatment that will stop the progression of the disease.

So, since a stop-cure is coming anyway, why lose a foot over it? OK, actually, maybe losing a foot today would be worth it because, who knows, in five or 10 years when the cure comes around, I may no longer be able to stand up. So yeah, in that case, it might be worth it.

I would never have described him as an optimistic guy. He wasn't hopeful -- just living fully within the grim uncertainties of ALS.

For some time now, his blogging has been brief, often riddled with uncorrected typos, and less frequent. His last words for us, offered posthumously:

ok i'm dead. so what? i partook of much wonder and beauty. you should be so lucky!

We were lucky to have known a bit of him. RIP BrainHell.

Read Bint's memorial.